Something that helped me alot... I wrote the date and times of activities that drained me - and the recovery time of rest before I felt average. This included

Something that helped me alot... I wrote the date and times of activities that drained me - and the recovery time of rest before I felt average. This included phone conversations, which I found had about a 14 minute limit. It was helpful in communicating with other health professionals a little, but immensely helpful in seeing a couple weeks go by and my activities got longer / further, and the recovery time got shorter. This also helped with the feelings of dread and worry when in the middle of something, I felt complete exhaustion - knowing I could look at a clock and count on 2 minutes to go by and I would be mostly normal again.. Things like that had a huge impact for me. After some months, looking back on where things were, I feel that I am doing okay, and better than I was, even if I am not where I'd like to be.